I am sorry that I am just now getting around to posting an update. We came home late yesterday evening and I was too tired to sit down and collect my thoughts. We had a very informative day and now have a plan of action. What a huge relief. First the CT Scan (Steven was so good, never moved or cried) showed that his aorta is extremely rare but it is a not a double arch. From what I remember the dr saying, his aorta is different because of the way the branches come off of it. Most of this is over my head but what was important is that it is rare but is functioning properly so nothing needs to be done about it. However the scan did show that he might have a small left pulmonary vein. Compared to the other three pulmonary veins the one on his lower left side is small. This could be that the other three are enlarged but it would seem that all four would be the same way as they are all serving similar functions. Now regarding the vein, until the surgery we will not know what, if anything will need to be done about it. It might even be cause for another surgery later. On to what is really important to us, as Mom and Dad, Steven's weight...he actually gained some ounces this week. Hooray for our sweet mess! All of this to say we are having surgery! This morning I rec'd the phone call from the "nice lady" at the scheduling desk. She had already spoken with Dr. Fraser and we are scheduled for Sept. 20 late morning/early afternoon!!! I am so thankful to have a date, we can see the light! Of course, a huge concern is Steven's overall health when we go for surgery. He cannot be sick, no congestion, no fever, no nothing! Which so far he has never been sick. But you know how our luck goes...ha! As Dr. Fraser and his nurse were talking to us, I was thinking "umm...I have a sore throat right now" and of course Miller didn't go to school yesterday because of a horrible cough. All of this to say, if you come over to our house be prepared to wear a mask, haha! Not really but I did go buy vitamins for us and for Miller. I will do whatever we have to so that he will stay well for this surgery. Thank you all for your continued prayers and support to us and our families! I will post more information later but I just wanted everyone to know that we are home but that our light at the end of the tunnel is visible!!!!
This was the sweet mess in between appointments yesterday!
What a precious smile! He's saying look Mom & Dad its going to be ok!! A big Praise to the Lord for answered prayers! :) With Him on our side who can be against us?? We are such doubting Thomases! My calendar is marked and will be continuing to pray for Steven and your family. AND good job Steven on the weight gain! Love you Mel! ps masks may not be a bad idea!
ReplyDeleteYes! That is awesome news! I will keep you all in my prayers that health will stay in Stevens favor.
ReplyDeleteHi Melanie,
ReplyDeleteI have 1 month old identical twin girls. They are the sweetest babes ever:) Baby "A" or Campbell Elise, also had a two vessel umbilical cord. As a result, she gas Tetrology of Fellot, which is a heart condition. She too will have to have open heart surgery. Reading your blog and seeing how positive you are is awesome! We know our babies will be alright, you just feel alone sometimes because no one ever talks about their precious babies heart condition.
Good luck to little Steven! My prayers are with you and him.